The saga continues....

[lovey]

Well, if you have been following my saga, things looked good yesterday. The cardiologist was very upset that with my overnight pulse oximetry tests, with 2 hours under a 88% oxygen level, that I had not been put on oxygen through my bipap by any of the doctors in the last month. He was going to get my primary doctor to write a script for the oxygen. I told the cardiologist that my primary always defers to the specialists, and won't do anything unless he is told to do so by another doctor. The cardiologist assured me that things would get done. I heard him dictating a letter to my doctor as I left, so I was pumped. I spent last night getting everything ready for Apria, info on the oxygen connector to my mask, and instructions on how to do "travel" oxygen script so I could get oxygen when I am in California from Dec. 17th-Dec. 31st. I even copied my insurance cards. All my primary doctor would have to do is write the script and fax it with the forms I filled out.

I delivered the packet early this morning. The receptionist said that my primary doc was not there and wouldn't return until Monday. With my count, I think he has been in 2 days in the last three weeks. I tell them that it really needs to looked at today, as I need oxygen ordered. The receptionist said that another doctor was there today (who I have seen once or twice), and I asked for that doctor to write the script for the oxygen and anything else could wait until my primary got back, but I didn't want to be without oxygen over the long holiday, as I had already waited a month since first bringing it up. She assured me it would get done today by the covering doctor.

So, I went out for a few hours, and soon after I come back, my primary doctor's nurse calls me. She makes me go over the whole story again, and I slowly had to tell her what to write to the covering doctor (looking back now, I think she was handed my note first instead of it going to the doctor like I asked). She kept asking me how many liters of oxygen I needed, and I said I didn't know, but it might be in the letter the cardiologist had faxed to them. Of course, nobody could find a letter. I was asked to call the cardiologist.

I call the cardiologist's office, and get put to a nurse. I explain the situation to the nurse, i.e. that the cardiologist was very concerned I hadn't had oxygen in a month because of the other doctors. She calls back and says that they faxed the letter, but it doesn't have a specific amount needed, i.e. 2 liters. She said that she talked to the cardiologist and that the primary doctor should make that decision, as he has more comprehensive information on me. This has happened 2 times before, when the specialists say it's a primary care concern, and in the end, I don't get treated in a timely way. I call back to the primary care doctor's office and talk to the nurse, and she says that my primary doctor, not the covering doctor, has to make the decision on the amount of oxygen (this probably was b.s.). Meanwhile, I had a podiatry appointment, and it was 4:15 and the primary doc's office closes at 5:00.

I went to the podiatrist's, and warned the podiatrist that I feel like slapping silly any doctor in this town! I had him in rolling in laughter of what I was going to do to each doctor, which of course he knew well. It turns out he has sleep apnea--he's a big teddy bear type. We planned a Friday night "doctor" smackdown match for me. I told him that the doctors in this town might want to use this invention called a telephone...it is used to communicate Then we talked about my old primary doc who actually did use a telephone and was deeply adored by the area docs and patients.
I am sure I was the entertainment for the podiatrist for the afternoon

But what is sad, is even though there is now a letter saying I should be on oxygen ASAP, after a month of doctors fumbling my care, I can't get a script. Unless there is a miracle tomorrow, I am not likely to get the oxygen started until next week.

Gee it's only oxygen...what's one more week...it's just my health in continued jeopardy. At least I'm well documented on all of this, and probably at this point could make a major complaint.

And who knows when the referral to the University of Michigan will happen at this rate.

Just rambling and venting.... Lovey

[Julie]

Have you considered going straight to the supplier (DME) and, based on your previous script, asking them for a little tank to get you thru the wknd, kind of like what pharmacists do on Fri's if you run out (no MD around) and they'll give you a few pills?

[lovey]

This is the first time I am on oxygen, so there is no script at the DME. The respiratory therapist at the DME last month looked at the oximetry results when he was checking out my bipap to make sure it was working properly and made the oxygen recommendation. However, it is a thought that maybe I should call the DME...maybe they have a way of getting an initial script through faster in this type of situation. Thanks! Lovey

[cpapqueen1]

I hate to bear the bearer of bad news, but unless the pulse oximtery resutls are less than a month old and done by a third party provider (not the DME) you will have to be re-tested (another overnight oximetry) before insurance will cover the O2. If I were in your shoes, I'd get myself a pulmonologist, someone who understands the severity of the low desats. Hang in there!!

[lovey]

Ugghh....they were done by an outside DME, and just over a month ago (October 22nd) . Thanks for the info though!

[cpapqueen1]

Sorry! I was trying to save you from an insurance denial!

[lovey]

I did call the DME about this. She says the 30 days especially is true for Medicare, but with insurance companies it can vary. And there is a possibility that if insurance denies it, my Medicaid might pick it up. So it's not totally bad news. I'm going to call my lazy primary care doc's now. Thanks again, Lovey...

[lovey]

The primary doctor's office nurse and I talked. First of all, the receptionist said that "you need to wait until next week to get this solved, but I'll get the nurse for you" The nurse listened, and decided that "we need to cross that bridge when we come to it"... She'll add a note to the pile... but it is still a week away. I hope it doesn't delay this further..

Again, a nice doctor "smack-down" match...where I could slap these docs silly... is becoming my dream...


Lovey

[echo]

The primary doctor's office nurse and I talked. First of all, the receptionist said that "you need to wait until next week to get this solved, but I'll get the nurse for you" The nurse listened, and decided that "we need to cross that bridge when we come to it"... She'll add a note to the pile... but it is still a week away. I hope it doesn't delay this further..

Again, a nice doctor "smack-down" match...where I could slap these docs silly... is becoming my dream...


Lovey

Auuuurgh UNBELIEVABLE!! Can you not threaten them somehow, with some sort of legal action? I mean they are literally denying you treatment!

Bridge, what bridge? We're drowning in the river!!! Sheesh, the nerve.

Need some muscle to pound some sense into them?

BTW Why can't the cardiologist write the script? Is he not allowed to, legally?

[lovey]

Yep, I could use some muscle...the lack of oxygen has weakened me !!! Either that or somebody needs to slip me some brass knuckles...

On the suggestion of the DME, I did call the cardiologist's today to see if he would order the oxygen temporarily. I got his nurse, who said he was out for the day, and they were closing in 15 minutes (1:00). On Monday, the cardiologist said that my primary doctor has to be the one to order the oxygen, as the primary doctor is the one who ordered the pulse oximetry tests that make me qualify for the oxygen. At this point, I just gave up today. There is just so much medical stuff I can deal with...

I probably can make a "duty of care" complaint at this point. The problem is that there is a huge shortage of family practice doctors in my area. And some don't take my Medicaid or my insurance. Next week, I am going to "remind" my primary doctor of his duty of care, and the "possible avenues" I can take at this point. I am going to "remind" him that an oxygen order is not something that can be put off, and he'd better get his staff to know that very soon.

I had a thought today that I should contact my old primary doctor, who truly cared about me, and was wonderful and comprehensive in my care. He works at Hospice in the area now. Maybe he could call a "friend" to take over my care, and take it over quickly. It's worth pursuing...everything is about who you know in this area.

Just to make things worse, I have developed flu symptoms in the last 12 hours. It's probably from hanging out in the walk-in clinic when I had my purple rash. Or the YMCA...I try to exercise... Aaghh. Life has got to get better!!!!
Lovey

[2girlsmom]

Wow, girlie. I hope you get this all sorted out soon. You should not be put through this!

[Shellie_p]

from experience if you have a doctor who drags their feet on things like this. Get others involved!!! 2 doctors ago I had one who refused to send me for a sleep test even though I had been diagnosed with apnea 13 years ago. When my machine broke I called his office they poo-pood at me and said theyd let me know before the end of the day. Well they never bothered to call back. I call them the next morning and they hadnt even TALKED to the doc yet. So I called my DME. THEY called the doc and talked to him but still got brushed off also so they called me back. We talked and it was decided I had to call the place i got my original sleep test and if they could get ahold of that they could replace the machine.
The sleep center gladly faxed the test and I got my machine but I still had to go 4 days wihout one and my apnea is severe. The only reason it was 4 days was cause it died on thursday. On monday I had a new machine.
M y DME and pharmacist never have any troubles getting what I need. Or if they do have trouble they rarely mention it. And I seem to have reason for fighting with one of my doctors every other month it seems. LOL
this month it was with one of my heart meds. One doc in the pratice raised my dose and didnt tell the others but told me. but now there NO records of the increase o.O

[lovey]

I have been. The sleep doc was supposed to talk to the primary on Friday. The cardiologist sent the letter Monday. I've asked the DME for help and they say their hands are tied. The problem is the primary care doctor hasn't been in. I think he has been in 2 days in 3 weeks. It's not like doctors advertise how many hours a week they are actually in the office. It makes managing serious medical conditions extremely difficult. Usually they are good at the minor stuff, but even last week, they told me to go to the ER over a rash! Or it would be 4 days until they could see me (never mind it was a burning, bubbling,pink rash!). I went to another practice's walk-in clinic. So lately, my doctor's office can't even handle a rash! If I had waited, who knows what the rash would have done in 4 days. And if I didn't have my Medicaid, if I went to the ER, I would have had a $150 copayment, and 30% co-insurance on all charges. Some doctoring...

I don't mean to sound "snippy"--I'm not feeling well. I'm just waiting to go to bed after soaking my hoses, etc. after reading another post here about the viruses and bacteria in the hoses... I do what I can.. Thanks, Lovey

[ofarchesandants]

I don't mean to sound morose but thank god you developed flu symptoms. Sounds like you've got another reason to go to the ER. If your rash was reason enough, lack of oxygen, respiratory infection and fear of death should be as well. Tell the ER doc you need oxygen. At the very least you will be on O2 while there and if your lucky enough to have low sats, they will have to either admit you or get you a script &/or contact the other docs. It's a shame to have to do that but it sounds like you are being left with no choice and without o2 the decline in respiratory and overall health with just continue. best of luck.
gregg )

[lovey]

You are right--it is very fishy that I have now flu symptoms. I also had the thought of the ER. In some ways, I am hoping I get a tad worse, so they'll have to spring into action. Right now it is mild.

I did go to the ER a few weeks ago. The problem is that I don't destat in front of them. They don't let me sleep when I am in there...they don't even want me to bring in my bipap, because it would have to be "approved", etc.
But if I am sick enough, and explain everything, and how the flu would make my sleep apnea worse and need monitoring, maybe they would admit me, and allow me to sleep and be monitored. I'd have to get the right ER doc.

I had a lot of anxiety in the ER about dying in my sleep with these oxygen levels last time...they are looking for a medical reason, and my anxiety doesn't matter to them, it seems. What they can't see in front of their eyes they don't take into account...both my emotions and the sleep apnea, because I am awake when they examine me.

I hope something happens though. Feeling weirded out, now going to bed! Lovey